Saturday, November 17, 2007

Let's have a conversation

There are people who don’t believe that autistics exist who are able to talk at some times and not others. They view this as a very different phenomenon from the autism they know, the autism that means never speaking or having access to only a few words. At least one such person refers to people who have “chosen” to become non-speaking autistics. There is probably nothing I can do to change the minds of people who have so much invested in seeing clear dividing lines between categories they call LFA and HFA. I don’t waste my time trying to convince them any more than I argue with people who don’t believe in evolution. My time and energies are limited.

This blog is for people who know this to be true, or are at least trying to get it: sometimes, for some of us, talking is not possible. Sometimes it is barely possible and uses up energy that could be spent more productively in other ways. Sometimes talking hurts. Fortunately, there are many other ways to communicate. I believe that nearly everyone can benefit from at least one of them.

Several comments to my post on therapists I’ve known and their collective aversion to silence suggested that this problem of disbelief is widespread. Being yelled at or disrespected for not speaking is far more common than it should be. One person also asked if there are particular stressors which contribute to problems with speech. I will address here just a few of the mechanisms I am aware of which make speaking (and also listening) difficult. In order not to make this unmanageably long, my intention is to follow up this post with one about things I have found helpful.

The first thing you will need to recognize is that conversation is a complex skill. Though it may come easily and seem automatic to you, speaking is never a smooth process for me. Suppose I am asked a question, “Would you like to go to the store now?” First, I have to figure out the literal meaning of this. Which store? Does “now” mean immediately, or could it mean in ten minutes? By “like” do you really mean to ask if I would enjoy such an outing? Or is this something I will be required to do, if not “now” then later?

Once that is sorted out, there is the subtext to consider. Are you asking me to go with you or alone? Are you going to be upset if I choose the “wrong” answer? I will need to interpret this in the context of what came directly before, and also any history I have with you about “going to the store.” I will need to observe your facial expression which, like your speech, I will need to analyze one part at a time. Is that a real smile or fake? To know this, I understand that I must check the eyes; I think I know that a raised eyebrow means impatience, but is this with me or something else? I will need to interpret the tone of your voice and also see if this fits with what the facial expression and posture seem to indicate.

Now I am ready to construct a reply. If I say simply “Yes, I am ready,” will this be taken as overly formal, or will you think for some reason that I mean the opposite? Is my face expressing the right level of agreement. I know that the word “sure” can be misinterpreted as sarcasm, so I won’t use that one. “Okay,” in this situation might possibly sound like I think I’m being coerced. So the answer is, “Yeah, lets go now.”

But it’s too late! You are already going into detail about how I never want to do anything.

As you can see by this description, conversation can be exhausting. How many exchanges like this one, and how many of far greater complexity does a person have to navigate in a day? At some point, the system will shut down, just as you will eventually need to sleep after working a full day or sit after walking a long distance.

If you accept that talking is a complex skill and difficult for me, think of it as analogous to whatever you can do fairly well with concentration and effort. This might be calculus or playing a difficult piece of music or speaking a language you have studied but don’t use often. What makes these things easier for you? What conditions are necessary for you to be able to do them?

A setting free of distractions is important if I will need to process spoken language. Background noises make this more difficult, and sounds you might not even notice may seem very loud to me. A TV on, even in the next room, can make interpreting language much harder. For some autistic people, lights and visual patterns are an issue. Most people on the spectrum have some sort of sensory issues; like everything else about us, these are highly variable.

Lack of sufficient sleep is a common occurrence for me and can also contribute to shutting down. Anxiety, depression and physical ailments will also affect my ability to process language. Pressure to respond more quickly (or otherwise respond in the way you would prefer) is nearly always counterproductive. This is something that will impede rather than enhance my ability to talk.

It is important to acknowledge that no matter how hard you try you may not know the reason for the disappearance of speech. In some cases, I won’t be able to figure it out for myself and there may truly be no better answer to the question than “I am autistic.” Furthermore, I may know the answer, but not want to tell you. That is my right. If you are able to understand and respect these things, there is a chance I will want to talk to you, though it will still be difficult.

I can't get speech to mean what I say anymore (less than I ever could anyway), yet some people believe that's a choice!?!

I used to have intermittent speech that was sometimes-semi-useful and sometimes not-useful and sometimes absent (my article here was written when that was true), now I have useless speech so I use other things. I don't get what the fuss is but some people seem bound and determined to make one.

I've eventually decided that people who believe that are people who would rather I not be able to communicate what I really mean at all, for a whole variety of reasons. And I have no interest in people like that. Until they get a clue, they're just being destructive asshats.

Often I have the words in my mind, I have perfect understanding, but it's as though they need to move from my mind into my mouth and I can't get them to do it. Often I struggle to initiate talking. When I was growing up it meant I spent the whole of my secondary school I nthe same PE Kit, because I didn't know to ask for a new one and my parents presumed I'd say (or they forgot). I was in pain for two weeks when the family dog knocked her head against mine and I couldn't say what had happened or ask for pain killers. At the age of 8 my dad threatened to place me back in nappies as I was having so many accidents (he didn't in the end), one of the reasons was I couldn't tell someone if I needed to go (and you'll laugh, but it took me until I was 19 to realise I could just go). I had accidents until my mid teens (not all the time but enough to be a concern for my parents) partly because of my difficulties with talking. More recently, when I was in labour with my second son I couldn't tell the midwife I needed more than gas and air. I had to look back and realise that I had bouts of depression in hindsight, brought on by bullying, as I didn't know to go to the doctors if I wasn't eating properly, or sleeping peoperly, or able to concentrate on things I could before or if I'd lost interest in things. It's nothing to do with being socially anxious, I've been with my husband now for over 13 years, he knows me, I know he doesn't judge me and yet I can't tell him if I'm upset over something, if I need something. Ask me about an event, something unconnected with me and, if it's a one to one conversation, I can often rattle away. Expect me to talk about myself in the offline world and unless you question me first and guide me by asking specific questions, you'll be waiting a long time. I have to admit that I've never thought to check out body language or try and decipher facial expressions. I honestly didn't realise until recently that it was somehing you were expected to do. Sometimes I lose understanding of the words, it's as though someone is speaking to me in a foreign language. Fortunately this doesn't happen often.

Very good post. So much of what you describe here reminds me of our daughter. You mention that you have a difficult time with sleep. Maizie certainly struggles in this area as well. When you can't sleep do you know what contributes to you not being able to sleep? Maizie can be awake in the middle of the night for hours at a time. She will say she can't close her eyes and needs something to do. I really enjoy your blog and am learning a lot from it.

Wow. Very well-stated. I've half a mind to print out this post and keep it in my cube with me at work. Spoken conversation is a very complex skill for me, to the point where even if I seem to be "keeping up" with a conversation, I'm likely to get exhausted much sooner than if I were using a mode of communication other than speech.

That alone makes me want to look into using speech alternatives more often, never mind the fact that sometimes it is impossible for me to say anything approaching what I'd actually like to express, and that sometimes I can't speak at all.

This post is actually quite timely for me -- I recently finished a work project that entailed a lot of real-time verbal communication (including plenty of phone use -- I very rarely use the phone at all by choice). And by the end of this past Thursday, I was in a state of near-total verbal shutdown. I had to keep starting sentences over and over again because I was at the point of just outputting random crap from the linguistic buffer as opposed to anything pertinent to the immediate situation.

I am still trying to work around my own stubbornness with regard to using AAC, but the aftermath of these past few weeks has definitely encouraged me in that direction. I am very, very tired of struggling to rely so much on a form of communication that requires a hugely disproportionate amount of my energy, while at the same time being far less effective than other means (e.g., typing).

Also, in addition to the reactions to difficulty speaking you mentioned (people not believing that intermittent speech is possible in autistics, people demanding fast responses, etc.), one thing I've frequently encountered is the, "Well, why don't you just practice?" reaction. (As if I haven't been "practicing" my whole life already!)

It bugs me to no end when, just when I've found a truly effective workaround for something that has been an issue for practically my whole life, I am treated to a barrage of advice on how I should "take some classes" or use some technique from a self-help book, etc., so that I might be able to do something the "normal" way after all. There's just such a huge normative bias with regard to almost all life tasks (not just communication), and I would be more than glad to see it go.

There is a big row going on in the UK in the pages of the Indepepndent that was provoked by an NAS leaflet which described an autistic adult who "prefers not to speak." Biomed parents interpreted this as a lifestyle choice that insulted their non-verbal children and never considered that there might be valid reasons, like the ones in your post, for his preferring not to speak.

Thank you so much for writing this. It explains what I have been trying to explain to certain people in my life for many years. So many people expect me to 'chit chat' and I just can't do it. My 'conversations' with people are more like monologues, they talk, I listen, then I may talk and they listen. There is no real 'chit chat.' It's an information expedition. Many people just can't understand that, even those that have known me my entire life.

Thank you Bev for sharing your personal experience and providing us with this wonderful article. It helps me put into perspective what my son struggles with when getting his thoughts into spoken form. I certainly didn't mean to put you on the spot :)just that the timing of your blog post and my son's struggle coincided. His language abilities come and go. Sometimes he astonishes me with it and other times I wait as he searches for a word, expression, whatever.

And thanks to all the commenters too. Your experiences help me in understanding and communicating with a 14y/o boy who would prefer that his mom would just bug off sometimes ;)k

You wrote: "Several comments to my post on therapists I’ve known and their collective aversion to silence suggested that this problem of disbelief is widespread.

Disbelief or, at times, misinterpretation of the silence. The one friend I speak to regularly called me on the phone twice today (that's unusual). At the start of the second call, she said, "You're weird today." What was "weird" (from her POV) was that I didn't have my speaking in gear. When I go for a while without speaking, it takes a while for me to switch myself into speech mode. That means my timing is off, I don't make noise(s) when I'm expected to. And she sure notices!

Pressure to respond more quickly (or otherwise respond in the way you would prefer) is nearly always counterproductive. Very much an issue for our Downs boy. He needs simple questions and lots of QUIET response time (not dad going, "well, do you? yes? no? want to? yes? will you?" etc!) or he shuts down.I also spent most of last week having a headachingly unproductive exchange with an ABA proponent about pressuring autistics to speak. grrr

As an Aspergian who is pretty High functioning, especially in social situations, sometimes I find it extremely hard to communicate. Sometimes it's easier to communicate with strangers as I don't have to live with consequences of the struggle to communicate as with my family members.

I had some of the same issues this weekend, and I can just say that when the questions get tougher or the situation is more tense, the response time for me to utter even a Neanderthal grunt is greater.

I had noticed that my son has the very same difficulties with speech at times. I am always cueing people to give him time to "process" their question, but they get impatient with him. He is six years old, and in school they don't have "time to wait for him".

Is there any easy way to explain this to outsiders who still think it's a crock (like at school)?

ballastexistenz,Yes, and reacting to pressure by proceeding even more slowly is then seen as "evidence" by some that this behavior is intentional, passive-aggressive or some such judgment. Very frustrating.

mommy-dearest,I have met "educators" like those, who are sure AS is nothing but an excuse for bad or weird behavior. I have been able to reach some of them through presentations about my own processing differences and my history in school. I really think that hearing from autistic adults can be helpful for people who have at least semi-open minds. Another idea would be to make up a resource packet for your child's teachers, using short articles to help explain various aspects of autism. Of course, they may "not have time" to read it, however concise.

I was going to comment on the therapist post that indeed the stubborn silent therapist made a mistake, but I see you fixed her good /grin. The word I will use for those others you mentioned is Obnoxious so :D at them.

I was a lot more verbal in school, where we were supposed to talk a lot of the time. In fact my loud voice helped me to get on the stage and perform either as master of ceremonies or as a play actor on many occasions.

Now that I don't have an environment that 'requires' a lot of talking, (mainly keyboarding instead) I find that I become hoarse when I have to speak too much.

I also agree about the pressure to respond quickly being a pain, and also hate it when people talk so fast I can't keep up. Though I think its mainly some of the patients where I work that have 'pressured speech' that I have to tell 'I can't hear that fast.'

So, so true. Many people aren't clear what they mean. I find it exhausting to have conversations sometimes. I can understand people much better if i don't look at them while they're speaking, but it's rude not to look, so I'll watch them for a few seconds, look away, get my response ready and then when it's time for me to speak it's less stressful to be looking somewhere in the middle distance rather than staring into my companion's face. After a lengthy conversation, I'm worn out and I retain very little of what was said. And I'm not even autistic!

I am extremely glad to have found your blog. You describe to me what I've thought, believed, dreamed and pointed out where I've failed. Please continue to converse with us. You are a window through which knowledge shines so bright for moms like me. You are richly blessing us. Thank you!

Thank you. I am a self-diagnosed Aspie (due to not having insurance or money for attempting a diagnosis of either AS or what I strongly suspect is fibromyalgia, at the moment), and I have struggled with this very issue my whole life. It tends to cause problems between me and others, when they pressure me for answers that I cannot give them because of how complicated such things are (in my head). I try to explain it to people, even my husband, but said explaining does not seem to work. I would like to print out this post of yours and give it to my husband to read, if you do not mind, because it says exactly what I've been trying to say for ages. And perhaps he will listen to someone else, rather like my mother tends to listen to him rather than me, about stuff that is important.

You have managed to beautifully articulate something that I have not been able to understand in years of marriage. I was sadly unable to interpreting his silence as anything but sullenness or anger, even when he tried to explain it to me. When I read this post it was as if someone had turned on a light. I sent it to him and said "Is this how you feel" and he said "yes." He has never felt as understood and accepted in his life as he does now. I can't tell you how much it means to both of us that you articulated this very complex issue so well. It was so helpful to both of us.

This is a good post for me as well. I amon the spectrum myself, I do not use synthesizedspeech, but in order to be validated for the existenceof the many other facets of my personality andskills it is then necessary for me to have a highlyskilled and self actualized therapist to allow meto find safe paths for me to speak or express myself. What I wish to say and how I am even able tosay it changes quite often, I am equippedto notice this. If there is one thing in my favor forbeing excused for my delayed speech as well asappearing uninterested, it is that there can beseveral interruptions in my train of thought as I show a sincere attempt to communicate, this willoften cause fear in a professional that is not used to me or my communication style. At leastthis makes one aspect of getting help for this problemeasier. I am now in my mid forties and just beginning to assert my existence rather than be someone who will simply let others hand mea script that is designed to their advantage, betterlate than never.

AKAIK I only am on the spectrum, but I'm convinced that my processing is slower for most things, at least at first. It's as tho the primary functions within my brain are slow, but then it's like I compensate by using alternate paths in my brain after replaying what it is that I have to analyze and then perform secondary and tertiary post-processing. This causes me to have longer reaction times for certain inputs or stimuli and laugh at jokes much after everyone else is done laughing, etc. but some things I can do almost simultaneously: Such as repeating something I've just heard, before I can even understand it.

But that is probably why I'm better at writing than speaking. I'm being less hounded, usually, for that which I wish to communicate.

😂So, howya doin? Nice day outside, isn't it? How 'bout them Bears!? What's happening? So, what do you think about the situation in Kuala Lumpur? What did you do this weekend/vacation? ...and so on... ...and on... ...and on...

Your post, Bev, could have been written by my daughter as her own experience. She would have added though her "need to see your mouth so she can lip read because auditory processing problems makes it difficult to interpret the sounds coming out of your mouth"

If someone is badgering me or bombarding me with questions I can end up shutting down. Also, if someone is accusing me, even if unjustly, which often makes me seem guilty when I'm not. Especially stupid questions such as "why did you do that?" -when I didn't even do "that" in the first place.